(dorky picture, but it makes you laugh I'm sure of it, so it's worth it!)
Remember this post where I told you about my deformed nose and then said that my next date with another new specialist, the rheumatologist, was going to be on December 14? Well I had that appointment and it was a great first meeting.
I had heard from the sleep specialist that Dr. W was THE rheumatologist to see, but to be prepared to wait because he takes a lot of time with each patient. Most people might think, "Oh that's great (sarcasm.)" but I thought, "Oh that's great!!!" (excited) I will wait for days if the doctor is actually taking his time with each patient to get to the root of the issues.
But luckily for me, I had the first appt of the day so no waiting for me, but true to what I'd heard, Dr. W did take his time. He spent 2 hours with me!!! We went head to toe, physically and historically and he really listened to me. When I said my blood work hardly ever shows when things are obviously wrong, he didn't balk, he agreed that does happen. When I threw in all the random things, because at this point it may be something I think doesn't mean anything that is the key to it all, he asked more questions about those things. I felt so comfortable and confident with him
At the end of our full work up Dr. W said, "Well you are a difficult case to be sure and you've been through so much. I admire you for your spirit and attitude. We'll work to figure this out."
And the thing is, he meant it and that felt great. Of course I didn't leave the appt with any concrete answers just a list of what he thought it could be, a lab slip, an order for an Xray and an MRI, and a follow up appt to go over the results of the former.
So here's the run down of what he said:
- I do have hypermobility syndrome. Basically my joints are loose and move around a lot, which can cause some pain, etc. He said I was born this way and cracked me up when he showed my how a "normal" hand is supposed to bend as opposed to mine, where I can bend my fingers to a 90degree angle.
As for all my other symptoms (joint pain, numbness, cracked lips, dry eyes/mouth, etc.) Here's what he's investigating first:
- Sjogren's Syndrome. I would have secondary Sjogren's if this is what I have as I already have another auto immune issues. Check out the link for details.
- Anykylosing Spondylitis/Enteropathic Arthritis . IBD related arthritis, which was the suspicion of the peeps at CC and subsequently my Awesome PCP.
- Avascular Necrosis. This would have been caused from the prolonged high dose prednisone I was on for all of 2007.
All sound possible and of course all are manageable, but none of these will ever go away. But that's fine as long as I know how to manage it. I'm not getting my hopes up that the blood work I did will yield any answers, but we shall see. At least Dr. W knows of my elusive blood work.
He wanted to see me back in one month, which would have been Jan 14ish. Unfortunately because of the time he takes with each patient, he doesn't double book so the soonest appt I could get was February 15! UGH. But I'm on the cancellation list and maybe, just maybe I'll get in sooner. I hate the waiting, waiting and more waiting.
So another big "treasure hunt" so to speak is on for my little body. I'm confident Dr. W won't give up on me easily, so even if the first round of tests prove nothing he'll dig a little deeper. That's all I can ask for.
And on the nose front, I'm just debating on when to schedule my surgery. To be honest, I'm not wanting to deal, but with a cold and sinus infection weaseling their way in right now, I know I need to figure this out soon.
More to come, it's always a health adventure around here. But I'm loving my new Rheumy, that's for sure!